Understanding the dying process

Information for families

This information has been created to help you to answer some difficult questions that you may have about the dying process. It is important to remember that just as people are unique, so too is their death.

It is almost impossible to tell you the exact time or manner in which a person will die. However, regardless of the illness, there are several similar physical symptoms and emotional changes likely to occur as death approaches.

Increasing tiredness

You will find that over time the person who is dying will become increasingly tired and weak. Although it is difficult to prevent this fatigue from occurring, spacing out everyday activities and ensuring adequate rest will help.

It is important to explain this to other family members and visitors. For most terminally ill people, this tiredness gradually increases until they finally become unconscious.

Managing anxiety and confusion

Shortly before death some people become restless, agitated and confused, however, they are usually unable to tell us why. This is known as terminal restlessness and it often occurs within the last few days of life and affects nearly half of all people who are dying.

There may be a variety of causes for this and sometimes sedative drugs are needed. A calm, quiet and stress-reduced environment, with reassurance from those who are close to the person, can often help to relieve this symptom.

Communication

Extreme tiredness can mean that the person finds it hard to sustain a conversation as they once could. You may find that after they rest, there are periods when talking to them becomes easier.

If you are concerned that the person has worries or anxieties, rest assured, just being there with them will give them support and comfort.

If and when they become unconscious they may not be able to respond to you, however, they will still be aware of your presence and the voices around them.

Studies indicate that hearing is the last of the human senses lost. So – if you can – keep talking to the person, even if they appear to be unconscious.

You may also wish to hold or gently massage their hands or feet as a way of maintaining physical contact. Playing soft music that the person enjoys can also be soothing.

Managing pain

Many people (but not all) with a terminal illness may experience pain. Pain can be due to a variety of reasons such as pressure on an internal organ, damage to nerves or lack of blood supply.

There are a number of medications available which can be prescribed, depending on the nature of the pain. Not all people’s pain will respond in the same way to a particular treatment.

The required dosage of pain medication varies widely from person to person. Sometimes it is necessary to make adjustments to medications.

Simple techniques such as repositioning pillows or bed clothes and gentle massage (if tolerated) can also provide relief from pain.

Loss of appetite

Most people lose their appetite in the last few weeks of life.

This is a very natural and normal part of the dying process because the body’s metabolism is slowing down and the person requires less nutrition. At this time your instincts may be to try and feed the person in order to keep up their strength.

Giving food is often a symbolic gesture of nurturing and showing love and depriving someone of food may feel like neglect. However, as terminally ill people become increasingly weak and drowsy, swallowing and digesting food and fluids often becomes harder and can place strain upon their body.

While terminally ill people may not eat or drink as much as usual it is important to still maintain good oral care.

Regular moistening of the mouth and lips will also provide people with comfort. The health care staff will be happy to show you how to do this if you would like to help.

Becoming unconscious

When or if this happens, repositioning people while unconscious will help prevent soreness and stiffness from lying in the one position for too long.

The person may also be provided with a special mattress to increase comfort and relieve pressure. Mouth and eye care are also important at this time.

Sometimes an indwelling catheter (tube) is inserted to relieve the feeling of a full bladder, but for most people their urine output is significantly decreased and often completely ceases.

Sometimes people are unable to cough and secretions may build up at the back of their throat causing a rattling or gurgling noise as they breathe. This noise can sound distressing to us but may not be a cause of discomfort.

Repositioning them on their side can loosen these secretions and there are medications available that may help to dry them out.

Health care nurses rarely use suction procedures as they can be uncomfortable and distressing and irritation can increase secretions.

Breathing

Before death you may notice a change in the person’s breathing pattern.

There may be periods of rapid breathing followed by short periods of no breathing at all. This is known as Cheyne-Stokes respirations and is very common towards the end of life.

As an unconscious person can still feel pain awake, pain medication will continue to be provided but usually by another method such as the subcutaneous route (through a butterfly clip in the stomach, arm or leg).

If you are concerned this looks uncomfortable in any way, please inform the health care staff and they will complete a pain assessment.

The dying process

Most carers, family members and close friends want to know exactly how long a person will live.

Some people will become unconscious a few days before dying and others may die quite suddenly or even remain awake to some extent right up until they die.

As people are individual we can never be certain how long the each person’s dying process will take.

Once death has occurred

When people die they stop breathing and their heart stops beating. They will not respond to any stimulation and their mouth may fall slightly open. Their eyes may also be open but the pupils will be large and fixed on one spot. They may also lose control of their bladder and bowel.

When this happens a doctor will usually attend and confirm the death of a patient.

During this time you may wish to contact a close friend or relative to be with you for support.

Take your time to say goodbye. Other close friends and relatives may also wish to say goodbye.

Some people will find additional comfort from the support of a spiritual advisor.

It is at this stage you will need to contact a funeral director. They can guide family members through the funeral arrangements if these have not been organised already.

As the death was expected, it is not usually necessary to contact the police or ambulance services at this time.

Caring for yourself

Caring for someone who is dying can be a tiring and stressful time.

The experience may bring up unresolved feelings or upsetting emotions including grief, regret and distress and you may feel overwhelmed.

If this is how you feel, it may help you to talk through your thoughts. The health care staff or your general practitioner may be able to support you at this difficult time or refer you to an appropriate service.

Remember

Hearing is one of the last human senses retained during the dying process.

Unconscious people may still hear you – keep talking, touching and providing comfort.

It is not possible to exactly identify how long a person has to live.

Acknowledgement: Adapted and revised from a brochure by the Comprehensive Evidence Based Palliative Approach to Residential Aged Care (CEBPARAC) Project

Acknowledgements
WA Cancer and Palliative Care Network

This publication is provided for education and information purposes only. It is not a substitute for professional medical care. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your healthcare professional. Readers should note that over time currency and completeness of the information may change. All users should seek advice from a qualified healthcare professional for a diagnosis and answers to their medical questions.